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I posted a question to the list last week about tTG Iga antibody levels and how quickly they should respond to a gluten free diet. My levels had not gone down in the way I expected since going gluten free. I had wonderful responses and once again want to say thank you to listserv participants for sharing their knowledge and support. Some responses echoed my experience and a desire to hear about the experiences of others.

This is a summary of the responses.

Many people warned about hidden gluten in food; particularly raw chicken/poultry and processed foods. Constant vigilance and reading the labels every time you purchase a product was a common recommendation.  Another common reminder was that the gluten free diet is for life and that small amounts of gluten can trigger an autoimmune response. A few people mentioned recent studies that show that 1/50th of a piece of bread, cumulative over a day, is enough to cause an immune response. Warnings about cross contamination from toasters, food preparation surfaces and when eating in restaurants were echoed by many. 

Other's shared their personal experiences with antibody reduction and intestinal healing. Some people reported rapid drops in these levels when going GF (6 months to less than a year); but many in my age group (40's to 50's) who had years of intestinal damage before diagnosis, including ulceration and villi flattening, reported that it took 2-5 years for their antibody levels to reach negative values (which vary by the testing laboratory). 

A few people mentioned immune reaction to substances other than gluten during the intestinal healing stage, having to do with increased intestinal permeability of the damaged or inflamed intestine and the body mistaking these substances for gluten and mediating an autoimmune response. Common culprits mentioned were dairy products and/or other types of grains or soy. 

My takeaway from the responses is that intestinal healing is an important element in reduction of antibody levels; not necessarily just the time on or compliance with a GF diet. 

I have decided to be more patient as my body heals from over 30 years of damage and to continue with a GF diet and constant vigilance for hidden sources of gluten. Hopefully my follow up EGD and colonoscopy testing will reveal healing and provide encouragement. 

 
Thanks again to everyone. 

Marge
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